In support of geleophysic dysplasia research, Ibrahim Al-Rashid, chairman of Limestone Asset Management, and his wife, Ryann, have donated $3 million to the University of Miami Leonard M. Miller School of Medicine. The couple has made the charitable gift in honor of their young son, who is affected by geleophysic dysplasia, and others who have the condition.
The donation will support the Al-Rashid Family Geleophysic Dysplasia Research Fund, in the Dr. John T. Macdonald Foundation Department of Human Genetics at the Miller School. The fund will support a comprehensive research initiative for geleophysic dysplasia that translates functional studies and the identification of treatment targets into drug screening and gene-based therapies.
The Al-Rashid family has been longtime and loyal supporters of many initiatives at the University of Miami Miller School of Medicine. Ibrahim’s siblings, Fahad, Salman and Mohammad Al-Rashid are longtime UM supporters who will also be participating in this donation. Led by the philanthropy of their father, Dr. Nasser Al-Rashid, the Al-Rashid family has donated over $20 million to the University of Miami prior to Ibrahim and Ryann’s recent $3 million commitment.
“When my wife, Ryann, and I were told that our son had been diagnosed with geleophysic dysplasia, we didn’t know where to turn, as the internet didn’t contain much information or hope. Geleophysic dysplasia was orphaned like so many other rare diseases,” said Ibrahim Al-Rashid, a University of Miami graduate and Miami resident. “For us and other families suffering from this devastating diagnosis, that hopelessness stops today. We are here for the community and hope that the research being conducted at University of Miami develops treatments meaningful enough to alter the course of those afflicted with this disease. We truly appreciate the University of Miami’s expertise, willingness and enthusiasm in taking on this research project. We urge those who have been diagnosed to contact us in order to strengthen our knowledge of the natural history of geleophysic dysplasia. You are our resource as much as we are yours.”
“It’s difficult to put into words how much my son’s diagnosis paralyzed me with fear. I continue to seek hope in every avenue possible,” said Ryann Al-Rashid. “I know God has a plan for him that is bigger than anything I can imagine. My hope is this research can help our son and every single person with this rare condition.”
If you have been diagnosed with geleophysic dysplasia and would like to provide the Al-Rashid family and the University of Miami with more information on the natural history of this condition, please call 305-243-2381.
The fund will be administered by Mustafa Tekin, M.D., Chief of the Division of Clinical and Translational Genetics in the Dr. John T. Macdonald Foundation Department of Human Genetics, at the University of Miami Miller School of Medicine.
“The University of Miami is one of the top places to study rare diseases; it’s not by chance that we are working on this particular study,” notes Dr. Tekin. “Our team has the experience and expertise, and now thanks to Ibrahim and Ryann Al-Rashid, we can take this work to the next level and get it done.”
“We are very grateful to Ibrahim and Ryann Al-Rashid for this extraordinary gift to fund geleophysic dysplasia research,” said Henri R. Ford, M.D., M.H.A, dean and chief academic officer of the Miller School. “Their heart-felt contribution allows us to advance much needed research into this rare disease and develop the treatment options that can improve and save lives.”
Geleophysic dysplasia, a progressive condition resembling a lysosomal storage disorder, is characterized by short stature, short hands and feet, progressive joint limitation and contractures, distinctive facial features, progressive cardiac valvular disease, and thickened skin. Cardiac, respiratory, and lung involvement result in death before age 5 in approximately 33% of individuals with ADAMTSL2-related geleophysic dysplasia.